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Am struggling with dd's behaviour and feeling SO guilty for not being able to help her

(12 Posts)
largeginandtonic Thu 07-Aug-08 11:48:16

DD was diagnosed with Turners Syndrome just before Easter.

Many of you were kind enough to post and offer advice and sympathy with me while i came to terms with it.

I have, well sort of. She has undergone a barrage of tests since then and most have come back very well. She has no heart problems that was a huge relief.

She has seen the Growth Hormone specialist and has chosen her device, we are waiting to hear from the drug company.

She is being seen next week to have a GA and 7 teeth out that i am hoping will ease her suffering in that area.

She has a late onset squint and will probably need surgery soon for that.

She is being seen by the ENT people to monitor her (thankfully) sucessful gromits op.

She had a kidney scan yesterday that unfortunately showed a horseshoe shaped kidney, they will keep a close eye on it. It explains her tendency to have lots of bladder infections.

What they are not helping me with is her behaviour! It is so disruptive in the house hold dynamics, she is unable to recognise any level of emotion unless it is extreme. I have to be jumping up and down and shouting for her to realise she is upsetting people. This causes major upset for me and her!

Her short term memory is appaling, i have a 1 year old and she persists in picking him up until he is shrieking. I presume as she has no idea how to gauge his level of distress unless it is at extreme levels she carries on regardless.

This goes for the other 4 boys too. I just hear screams and shouts from them.

She likes routine and to know what is going on, if anything disrups this she gets stroppy and storms off.

She is SO loud and SO strong i can do nothing with her. Talking calmy makes no impact.

The team she is under are great but seem only interested in her medically. Her issues are emotional largely.

Who do i talk to and which department can i stalk grin I am grin losely there btw as my sanity trots off down the road.

Ta for reading the long spiel, much appreciated.

moondog Thu 07-Aug-08 11:50:27

Has she seen a salt? They can help with social skills.

largeginandtonic Thu 07-Aug-08 11:53:43

What is SALT?

moondog Thu 07-Aug-08 11:54:19

speech and lang. therapist. Your GP or HV can refer.

largeginandtonic Thu 07-Aug-08 11:58:34

Thank you!

I have not been referred to them as she does not have speech or language issues i presume?

My HV and i have fallen out after she came to the house just after the diagnosis and despite being told dd knew nothing of the diagnosis proceeded to name it and talk all about it in the presence of her and an entire room of children.

I ushered her in to the kitchen as she would not get the subtle shut up hints. She carried on regardless and i ended up asking her to leave. I was astounded.

My GP is also useless, when i went to see him heis only helpful advice was to hnd me a prescription for antidepressants hmm

I may have to wait till i see the consultant and ask her?

moondog Thu 07-Aug-08 12:02:47

Try ringing dept. yourself. Sometimes you can self refer. Or,insist GP refers.

moondog Thu 07-Aug-08 12:03:19

Just say 'semantic/pragmatic issues'. That lets them know what you mean.

largeginandtonic Thu 07-Aug-08 12:06:03

Thank you, thank you moondog. Will write notes and phone them later.

I may have to take them all out after lunch, the noise level is unbearable. Poor neighbours.

slightlycrumpled Thu 07-Aug-08 13:04:43

Hi LGT,

My DS2 also has a genetic condition and just wanted to add that, if you don't already have one, ask for a referral to a consultant community paediatrician.

They will look at the overall picture of your DD and deal with her behavioural issues as well as her medical ones and, hopefully, refer you in the right direction.

I know not everyone is so lucky but our paed, (and we did insist on seeing the consultant) has been fantastic.

I've also found it helpful as she speaks to all of the other doctors, speech therapist, senco and school involved in his care and education.

largeginandtonic Thu 07-Aug-08 17:51:10

Thanks SC we have the community pead who leads her care and coordinates with all the other people.

She is very nice but i dont see her again till December. I think they were all geared up for the medical side as her condition has just been found (she is 8) and not really thinking about the behavioural side of it.

How is your son?

HairyMaclary Thu 07-Aug-08 18:28:42

Hi LG&T, you can ring the community paed, or her secetary and leave a message asking to speak to her about these issues, she may suggest an earlier appt or refer you to the appropriate people from a phone call. I now bypass GP and HV and go straight to our paed for everything. If you have had any reports from her then her direct line should be on it, maybe even an email address. I've found it's always best to go straight to the top!

largeginandtonic Thu 07-Aug-08 19:45:44

Thank you Hairy! Will do that tomorrow i think. I have peaks and troughs with it all.

Blardy hell it is hard sometimes!

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